Pancreatic Disorders Group: Introduce yourself and connect with others

@venture Seems like being a perfectionist really works for you! You have controlled your T1D very well. Did it take awhile to understand EPI and make the 2 works for you?

@becsbuddy
Once I was diagnosed, I knew more than my Drs. as to proper amount of Creon. I am at the severe end of the test and they prescribed me ONE 24000 pill per meal. That obviously was not enough and due to this mess up I had many dangerous hypoglycemia episodes. And I did research and told the Dr , “per the Creon guide this is not correct!” As stated before, went to a different gastro Dr after that was corrected to proper qty of Creon. It took weeks to get through to the ignorant Dr. Seems they don’t look at med info, which relates to amount needed due to physical size . I am not overweight.

In February 2023 I experienced an episode of vertigo which resulted in a fall. MRI revealed 4 fx ribs and an incidental finding of several cysts…on pancreas, kidneys and ovaries. MRCP has been done every 6 months and the last one revealed some growth of one of the pancreatic IPMNs. University of Michigan surgeon recommends a total pancreatectomy (can’t be done robotically) which would result in my becoming an insulin dependent diabetic (insulin pump needed) to prevent the “possibility” of the IPMN turning into cancer. Pancreatic sequencing was done on the 5 IPMNs biopsied. Only 1 was considered mod-high risk (distal). I am going for a surgical consult to UPMC (Pittsburgh) on 5/8/26–they recommend removing only the IPMN that has increased in size and can do this surgery robotically. I am struggling. I feel great. No issues. I just want to forget I even have this predicament and just live my life. I’m 75 and understand that I’m not going to live forever…debating with myself if I should even do anything at this point and just let life take its course…

@lee118424 Welcome to Connect. I can certainly understand your indecision at this point. Becoming insulin dependent is a major life change. I have had IPMNs for a number of years and have MRIs to evaluate growth or changes. My age is about the same as yours and it is a difficult decision to make.

I'm rather interested in your comment about "pancreatic sequencing." I'm not familiar with that procedure. Could you explain a bit more about what that reveals?

I see that you have a surgical consult scheduled on 5/8 in Pittsburgh. Have you already had a phone consultation in which you were informed that this IPMN could be removed laparoscopically?

@hopeful33250
Pancreatic sequencing is a molecular analysts done at UPMC (gurus for this and sent there by my University of Michigan GI Dr.) My younger brother just had a bile duct obstruction and they incidentally found a tumor on his pancreas head. He had genetic testing done and there are no genetic markers. But since my brother has this they upgraded my “moderate” rating to “high risk”.
I found this on pancreatic sequencing: “Pancreatic sequencing in IPMN usually means molecular testing of cyst fluid or resected tissue to look for mutations such as KRAS and GNAS, sometimes with added genes to better identify high-risk or malignant cysts. In IPMN, sequencing can help distinguish benign-appearing cysts from lesions more likely to progress, and it can also clarify whether a later lesion in the remnant pancreas is a recurrence, spread, or a separate new neoplasm.”
UPMC is where physicians from all over the country send tissue to for analysis. And yes…I have been speaking with the UPMC physician who did my brother's Whipple procedure robotically there.

Your pancreas does two jobs…
Regulates your blood glucose(insulin) and puts out required enzymes to digest food, must use Creon or Zenpep to replace your non-existent enzymes. I know someone who had his pancreas removed and did very well. Another had partial removal also doing well. An insulin pump is not required if you don’t mind giving yourself insulin injections. Being 50 years T1D , injections it’s not a problem. Just depends on studying the different types of insulins that give you best control depending on your daily routine. Be aware some Drs do - “one type of control fits all.” Need to Ask questions. “What should my A1C typically be doing it this way?”
FYI my A1C is always below 6.0, typically mid 5’s and 5.7 is high side of normal. Also you will need a CGM(constant glucose monitor) Dexcom or Libre.

In the fall of 2025 I had a bad pancreatic attack - 4 hours long, pain level 8. I saw GI and when I said I had pancreatic attack he said how did I know, Dr. Google? (Said sarcastically). Two months later, 2nd pancreatic attack, also 4 hrs and pain level 8. I did my own research and put myself on a strict low fat diet. Which did stop the 4 hr attacks. Had MRI and have cyst in pancreatic tail, and IPMN in branch ducts. 6 month followup MRI - no changes. I also have stage 4 lung cancer. My GI doc is dismissive of my GI issues due to the lung cancer. After my 3rd chemo cycle I had severe digestive issues which caused me to stop chemo. Oncologist didn’t think it was chemo that caused digestive issues. My dietician recommended Fecal Elastase test and oncologist ordered it. She said she’d consult with GI. My fecal elastase test cane back at 124 - low. I saw the result on my record but no doctor responded on it. My Pet Scan (for the lung cancer) showed no apparent cancer in pancreas. However, it said this: pancreas entropy. I continue with digestive issues with no response. Tomorrow I’ll see dietician to discuss. I’m so disappointed with GI and have sent message to my nurse case manager to get help getting a different GI, no response yet. I’m obsessed with my pancreas issues, more than my lung cancer which is treated with targeted therapy and improving! I think I need PERT. Why is GI so difficult to get help from? My dietician is the only professional paying attention. He suggested the Fecal elastase test. Why didn’t my GI suggest this or any other test??. Very frustrating!!!

I was diagnosed with pancreatic insufficiency six years ago. I have a cist and chronic pancreatitis. Enzymes made ahuge difference, but they always were hard for me to take. Now I can’t take them at all without pain in my back at the bottom of my ribcage and wrapping around to the front on the right side, which is not where my high-back pain normally is.

I would like to know if there are others who can not take enzymes and if there are doctors working with people who can’t take them.

70 year old male diagnosis with autoimmune pancreatitis type 2 diagnosed in February 2023 at MSK in New York. Secondly diagnosed with pernicious anemia in February 2026. I was on the table to have a WIPPLE procedure when a very skilled surgeon had my pancreas in his hand and determined it wasn’t pancreatic cancer. I Had my gallbladder removed than responded well to steroids post surgery. Now I’m juggling the long term effects of prednisone use, DM, and possible pancreas scarring. My blood sugar and my digestion improves with 5mg of prednisone daily but I have acute episodes where more steroid use is needed I have an excellent GI specialist but it’s hard to find a endocrinologist who has experience with these diagnosis’s. I’d like to keep my health span as close to my lifespan as possible. So what does a person do? There’s not many of us with AIP TYPE 2 . Larry